Susan Love, doctor/patient

Surgeon, researcher and professor Dr. Susan Love has led the charge against breast cancer and for women's health. (Los Angeles Times)

And now, she is the patient. For decades, as a surgeon, researcher, professor and medical celebrity of sorts, Susan Love has led the charge against breast cancer and for women's health. She served on President Clinton's cancer advisory board. She set up a research foundation. Her book on breast cancer is on the short shelf for clinicians and counselors. And last June, when, like so many women, she was feeling and doing fine, the diagnosis came. Except it wasn't breast cancer but leukemia. The woman who has battled one kind of cancer on behalf of millions of women finds herself fighting another kind, on her own

behalf but not alone.

How did you find out you had leukemia?

My rheumatologist was retiring, and I had some arthritis, nothing serious, and I went in to see her. Rheumatologists always draw a lot of blood. I came back to work. I had run five miles the night before. I was feeling fine. I got a call two hours later from my primary care doctor saying: "I have shocking news for you; come back right now to UCLA for a bone marrow biopsy." The whole way over, I'm trying to remember — blastocysts, what does that mean again? When it's you, everything's out of your brain. Within 24 hours I was diagnosed with leukemia.

You've been on the other end of that call so many times.

Absolutely — those shocking phone calls where you change somebody's life. Your whole sense of yourself, of the future. It's "Oh my god." With breast cancer, it's a lump, but it's not like you're throwing up — you feel fine, then somebody tells you, no, you have terrorists growing in your body. So it was quite shocking. Within two weeks I was in City of Hope.

What did they do?

With leukemia, the blood cells have gone off. So you can't really have surgery; you can't cut out somebody's blood. You carpet-bomb — you blast away with chemo, and you kill everything. That's step one. Then you wait a little and make sure there wasn't some terrorist hiding in a cave that crawls out again. Sometimes they do it again to make 100% sure. Then they give you a bone marrow transplant.

Luckily my baby sister's bone marrow was a match. It's really a trip because it changes your blood type. I was O positive and now I'm B positive. That's actually good because if there are any leukemia cells that crawl out later, the new bone marrow cells recognize them as foreign and can knock them off.

You had a team — doctors, nurses, your partner, your daughter, your siblings.

I had somebody in the room with me all the time. And City of Hope — they have two floors for bone marrow transplants. They've been doing it forever. The nurses, the orderlies, everybody there — that's what they do, and that's what you want.

How are you now?

Right now I'm fine. After the transplant you have to be home for 100 days; your immune system is getting better. If I go to the symphony, I wear a mask; you don't know who's there, and if they have flu or a cold, it's not worth it. Right now my bone marrow is clean and I'm feeling stronger, but something could be hiding — you never know.

If you have appendicitis and I take out your appendix, you're cured. But with this, it's not, "Now you're done and back to normal." You live in a different world.

In a couple of ways. About a year ago, I was at a conference in San Francisco, and I said, "We're all patients" — that the difference between a researcher and a patient and a doctor is that a patient [has] a diagnosis. We all need to put our expertise together.

It was prescient — little did I know! I feel even more strongly now that we make this artificial boundary. We have to rethink how we approach research. [Researchers] want to study ideas that might have applications to diseases, but we need to have the people with the diseases saying, "These are the things we need answers to."

In the old days, Pasteur would go from the patient's bedside to the lab and back again. But now doctors take care of patients; the researchers are way over here. Research is driven a lot by how we can get the next new drug that will make a lot of money and make us famous, as opposed to answering these questions.

I always talked about but never fully knew the collateral damage of treatment. Now I know it in a real way. I know it in my numb toes. I know it in the metallic taste in my mouth. These are things physicians discount. They're "You're lucky to be alive." [Doctors] focus on survival and not on what you have to live with.

If anything, having cancer myself has given me a new sense of urgency. We have a limited number of days in our lives — you become more aware of that — and if I'm going to spend them coming to work, then I'm not going to be just diddling around.

Has the leukemia changed what you want to happen in breast cancer research?

It makes me more in a hurry and more impatient with the status quo. We've been doing this breast cancer advocacy work for over 20 years. I think we achieved awareness and we've raised a load of money, but we really haven't made a major dent in the disease. Research should be finding the cause, not the cure. The cure implies you're going to get it, and then you're going to do some horrible [procedures] and live with the consequences. Why can't we not get it in the first place?

I went to the American Assn. of Cancer Researchers [meeting] last year, and a woman got up to talk about the HPV vaccine, half the audience walked out.

Why?

Because that's not interesting to these scientists. They want to get the Nobel Prize — their goal is different. [Vaccines] are done, they're boring. Public health issues that might have a more immediate effect are not funded and not pursued and are not sexy.

There's more than one kind of breast cancer, and there's been speculation that some of them are influenced by things like diet and exercise and stress.

We focus a lot on cancer cells. We all have cancer cells in us. [The question is] the environment for them to grow, the neighborhood. If you clean up the neighborhood, you can actually keep the cancer cells dormant.

What do you think of the Susan G. Komen Foundation controversy, when it pulled funding for breast cancer screenings from Planned Parenthood?

These things sometimes happen when you get big and lose touch a little bit with your constituency. The credible thing is how they recover, and that's what everybody's watching right now.

Does it bother you that the word "boobies" has been used for breast cancer awareness?

It's generational. Younger people react differently.

What I do worry about is that we've become so aware that people are so afraid of getting breast cancer, more than is warranted. We went from one extreme almost to the other. We need to refocus. Awareness, we've done that. We can check it off. To spend money on having the NFL wear pink or lighting buildings in pink — I don't think that's the wisest use of money anymore. Now it's actually doing something about it.

You're marshaling women through social media to become one big case study.

To go back to my idea that we're all patients and in this together, we have the Army of Women now over 300,000 women who've signed up to hear about research studies. And researchers can come to us with their study and we can e-blast it to everybody in the army. It's a way of crowd-sourcing research — matching volunteer study subjects, with and without breast cancer, with researchers. The bigger the study, the more it becomes self-correcting. Researchers are amazed at how eagerly women are signing up for these things. We also have healthofwomen.org.

Women say, "My friend had chemotherapy — why wouldn't I do this?" Most know someone who's been through this. My goal was to move more research out of the lab and the rats and Petri dishes and more to women. If the problem was curing rats, we'd have done it a long time ago.

And what about you?

Leukemia is pretty aggressive; I don't think about it in that way. I really think that it's a reminder that we have a finite term. Being raised a good Catholic girl, now an Episcopalian, I was raised to make the world a better place. I've got to do that.